Archive for Katie Paradis
Full-family support sees Hannah and her parents through AVM surgery
Nine-year-old Hannah from Vermont is passionate about skiing; not much keeps her off the slopes. In fact, not much slows her down or dampens her energy, period. So, when she experienced a ruptured arteriovenous malformation (AVM) last spring, she wasn’t sidelined long. Her parents, Katie and Rich, credit Hannah’s remarkable recovery to her vivacious spirit ... Read More about Full-family support sees Hannah and her parents through AVM surgery
The power of a second opinion for Merritt’s spina bifida care
In March 2020 — at the height of the COVID-19 lockdown — Jenna, Brian, and their 2-year-old daughter Merritt were practically the only passengers on their flight from Charlotte to Boston. Waiting for them in Massachusetts were Dr. Benjamin Warf, Dr. Carlos Estrada, and other experts from the Spina Bifida and Spinal Cord Conditions Center ... Read More about The power of a second opinion for Merritt’s spina bifida care
For Ana Sofia: How one mom found prenatal care for fetal pleural effusion
Alexandra is the first to admit she asks a lot of questions and needs to know details. “I’m curious about everything, and I want to know everything,” she says. “I do my research. I’m a pretty resourceful person.” It’s something she says can be off-putting to some people, but it’s also what saved her daughter’s ... Read More about For Ana Sofia: How one mom found prenatal care for fetal pleural effusion
A seat at the table: One family’s story of finding advanced care for hydrocephalus
To her parents, everything about 6-month-old Stella is a miracle. Rose and Vlad were ecstatic to learn they were expecting a baby after Rose was diagnosed with uterine fibroids. When Stella arrived months early, they were astounded by her ability to keep growing stronger. And when her doctors discovered a buildup of cerebral spinal fluid ... Read More about A seat at the table: One family’s story of finding advanced care for hydrocephalus
Helping Jasmine manage Sturge-Weber syndrome before symptoms start
Sturge-Weber syndrome is a rare neurovascular disorder that increases the risk of seizures in infants due to abnormal blood vessel development in the brain. Almost 90 percent of children with Sturge-Weber experience their first seizure before age 2, which makes proactive, seizure-preventive care important in minimizing the risk of long-term brain injury. Finding such care, ... Read More about Helping Jasmine manage Sturge-Weber syndrome before symptoms start
A partner through amniotic band syndrome: Jace’s story
Jace is a happy, energetic 9-month-old whose big brown eyes light up a room. He’s adored by his parents, Kait and Evan, who not only delight in being first-time parents but are also incredibly appreciative of the care that helped save their son. It was care that took a village, Kait and Evan say — ... Read More about A partner through amniotic band syndrome: Jace’s story
Guided by her own experience, one mom navigates Stickler syndrome with her children
Aimee is more than just Mum to three-year-old Arwen and one-year-old Cedric; she’s their guide to navigating Stickler syndrome, a genetic connective tissue disorder that can cause an underdeveloped jaw and airway obstruction (collectively known as Robin sequence), as well as cleft palate, vision and hearing difficulties, and other findings. As a carrier herself, Aimee ... Read More about Guided by her own experience, one mom navigates Stickler syndrome with her children
Optimal care, lower costs: Examining the benefits of out-of-network care for pediatric moyamoya
Moyamoya disease is a rare condition that affects the blood vessels in the brain, especially in children. Narrowing and blockage of vessels significantly increases the risk of stroke and requires surgical revascularization for treatment. Although research shows that outcomes of revascularization are better at high-volume centers, insurers often hesitate to approve out-of-network care. However, a ... Read More about Optimal care, lower costs: Examining the benefits of out-of-network care for pediatric moyamoya
Celebrating the unexpected, Miley’s family navigates Apert syndrome
Miley is the first girl born into her family in almost a generation. Hearing the delivery team announce, “It’s a girl,” is a moment her mom, Nicole, and her dad, Mike, will always remember. “We just cried,” says Nicole. “I’ll never forget that moment.” But what they also discovered at delivery was something else they ... Read More about Celebrating the unexpected, Miley’s family navigates Apert syndrome
Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
Shannon’s journey through a challenging pregnancy with TTTS (twin-twin transfusion syndrome) was, as she puts it, an emotional rollercoaster. In addition to the usual first-time parent jitters and the unexpected news of twins, Shannon and Mike navigated the emotional ups and downs of the rare pregnancy complication. TTTS put their twins at severe risk of ... Read More about Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story